Benefit for Irish children suffering from Batten disease takes place in New York

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Soairse and Liam Heffernan suffer from a fatal brain disease

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A benefit to help save the lives of two Irish children is planned for Sunday, September 26 at the Kerry Hall in Yonkers.

In an all out effort by members of the Irish community in New York to raise as much money as possible for the Saoirse Foundation, hundreds of people are expected to attend the benefit which was established after four-year-old Saoirse Heffernan from Co. Kerry visited Weill Cornell University Hospital, New York in May to assess if she is strong enough to undergo a gene transfer trial that may save her life.

Saoirse and her 2-year-old brother, Liam, have a fatal disease called Late Infantile Batten Disease. Irish doctors told them that nothing could be done for them and within a few years they would die.

Not happy with the prognoses, Tony and Mary Heffernan, the children’s parents, went in search of alternative treatments and happened across a medical trail at Cornell Hospital.

Based on the cost incurred by U.S. families who had children on this trial the Heffernans estimate the fee to be around $500,000 per child. 
If Saoirse makes the final cut then a substantial amount of the hospital trials will be paid for. The Heffernans will be responsible for everything else, including living expenses, for 18 months, the duration of the trial in New York.

However, if Saoirse doesn’t make the first cut she may be granted a place on a “compassionate use” trial, a program that allows its treatment to be administered to seriously ill patients that are not enrolled in clinical trial. The Heffernans would have to incur the cost of this program.

If accepted to the trial Saoirse will undergo gene therapy, which involves injecting a harmless gene-bearing virus into the brain. It has been found to significantly slow the progression of the disease.

The ultimate goal of the Saoirse Foundation is to save the lives of Saoirse and Liam and all Irish children with the disease and to help find a cure for future generations. There are currently only five Irish children with the disease.

After undergoing several tests while in New York in May, Saoirse’s family are waiting by the phone in the hope that she will be granted a place in the coming months. 

To date two children have been chosen to fill the spots for September and October but the Heffernans have been told that their daughter is still on the list. Liam will be assessed next year.

 Tony told the Irish Voice from Ireland on Monday that a request by the hospital for x-rays and a chest report for Saoirse came back “good and clear.”

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